Our son has CF and is 3 years old. He got off to a rough start due to not being diagnosed but amazed the doctors at his recovery and continued health. We work hard at keeping him healthy like all parents do. We see ourselves as the head of the team who cares for him which I think is really important. You know your child best and are equipped to research and understand what kind of support to provide from traditional CF care to the right foods and supplements. Never let the physicians feel you are turning your child over to them...you are the one who cares for him/her, they are there to help you do that by providing you with current information, advice, and inspiration to experiement with what works best in terms of treatment and prevention for your child.
We have chosen to research and use a diet rich in whole foods and healthy high calorie meals/snacks. We avoid processed foods which are filled with hydrogenated oils, corn syrup and sugar. We have had to disregard much of the advice the nutritionists gave to us early on and he has benefited greatly for it. We use supplements which promote a healthy immune system and support an anti-inflammatory environment in the body. These include DHA, probiotics, GSH (Gluthathione), tumeric, magnesium, ADEKs, and taurine. We also use elderberry and other natural plant-derived formulas when he is ill and as a preventative. This has worked well for us thus far; he has not been on an antibiotic since he was 15 months old and goes through colds easily. Daily he takes enzymes at each meal, does his vest 2x daily along with inhaled GSH, and then the supplements I mentioned above. This works well for him thus far and he doesn't required any other lung support.
He has gained well and is in the 50% or there abouts. While all CF expression is highly variable, I have met alot of people who have improved theirs or their child's health simply by making some changes to diet and adding some well thought out supplements to their regimen.
If you are unsure what types of supplement support your unique child may need there are Naturopaths and Integrative MD/DOs that can help you figure things out. CF physicians do what they do well and doctors with a more holistic point of view can be amazing at filling in the cracks.
I look at caring for my son no differently as I do my daughter w/out CF or myself. We all come here with genetic strengths and weaknesses and it is my job to support his body so it can do well with the challenges he came to this world with. I feel a well supported body has a better chance of being healthy no matter what. Illness still happens at times, it isn't a magic bullet, just something worth investigating and discussing with your care team.
Above all, CF is in the background for the most part. He is just who he is and his strength and personality far outshine a label attached to him because of a mutated gene.
We have chosen to research and use a diet rich in whole foods and healthy high calorie meals/snacks. We avoid processed foods which are filled with hydrogenated oils, corn syrup and sugar. We have had to disregard much of the advice the nutritionists gave to us early on and he has benefited greatly for it. We use supplements which promote a healthy immune system and support an anti-inflammatory environment in the body. These include DHA, probiotics, GSH (Gluthathione), tumeric, magnesium, ADEKs, and taurine. We also use elderberry and other natural plant-derived formulas when he is ill and as a preventative. This has worked well for us thus far; he has not been on an antibiotic since he was 15 months old and goes through colds easily. Daily he takes enzymes at each meal, does his vest 2x daily along with inhaled GSH, and then the supplements I mentioned above. This works well for him thus far and he doesn't required any other lung support.
He has gained well and is in the 50% or there abouts. While all CF expression is highly variable, I have met alot of people who have improved theirs or their child's health simply by making some changes to diet and adding some well thought out supplements to their regimen.
If you are unsure what types of supplement support your unique child may need there are Naturopaths and Integrative MD/DOs that can help you figure things out. CF physicians do what they do well and doctors with a more holistic point of view can be amazing at filling in the cracks.
I look at caring for my son no differently as I do my daughter w/out CF or myself. We all come here with genetic strengths and weaknesses and it is my job to support his body so it can do well with the challenges he came to this world with. I feel a well supported body has a better chance of being healthy no matter what. Illness still happens at times, it isn't a magic bullet, just something worth investigating and discussing with your care team.
Above all, CF is in the background for the most part. He is just who he is and his strength and personality far outshine a label attached to him because of a mutated gene.